Saturday, November 26, 2011

Thanksgiving is an American holiday, granted, but it's also THE holiday that should be adopted by everyone in the world, regardless of religion or believes. So, from here on, I declare, Thanksgiving day in our house will be The De Armas Happy Feast! Sure, we will still eat Turkey (and pork, and rice and beans, and flan, and Cuban bread....etc) and all the fixings but we will also be thankful because we have faith and we have hope and now we can say that ALL of us in this family have finally learned to believe.

We are, indeed a family of believers. I confess to be the biggest offender at never giving up when others tell me to let it go. Raci has learned to trust me and takes most chances along with me. Rebecca is more of a stubborned person than a believer but I am not complaining - it's part of her charm and it gets the job done. Victor, well, that kid is just so good he will believe and trust until the day he dies. Now, Frankie is another story. Believing? Trusting? Not a chance! Well, on the best day ever, on the day that marks our Happy Feast, all that changed, thanks to a Kindergarten Fall Festival and two wonderful teachers who have helped him try and try again.

Frankie has been working with his Developmental Kindergarten teacher on a "blending" program, where Kindergarten students in self-contained classrooms have an opportunity to join the General Ed, Full-day Kindergarten class during the day, for academic or recreational time, based on their ability to cope with the requirements. I must say it was not easy at the beginning and we were both very, very scared. This was something that terrified Frankie and made me hesitant. Still, we took the plunge and the process has been amazing for him. In less than two months, he's spending more and more time in the General Ed class, without support or an aid and doing the work his peers are doing. He doesn't always finishes his work so he brings it home - no matter how much complaining and whining, he has learned the work doesn't go away. He has to finish it and he does. When he turns it in and brings it back with a star or a nice comment, his face is lit up brighter than our Christmas tree! I volunteer on Mondays and Fridays to help with a special activity they have in Kindergarten called "stations" where the kids have the opportunity to move around the classroom as a small group to experience different kinds of fun learning stations....I did it at first to be there to coach Frankie and see first hand how he was coping with his "blending" - the possibility of bullying, teasing and mean words that can hurt more than punches had me terrified and I wanted to make sure I was there to re-direct. Well, what I found is that Frankie can hold his own ground and that he is stimulated to learn by the challenges he has to face in a General Ed setting. Most importantly, he is willing to TRY. No matter how much we praised him before, "I can't" was his motto. You would tell him he had a positive trait or a great ability and he will answer right away with a "No, I am not - No I don't!" - it was frustrating and sad at the same time. As he spends more time on a General Ed setting, he believes he can do the work and what is expected of him as a "November Kindergartner." He can listen, follow directions, ask for help, and be part of a team....that's all perhaps not a big thing for a typically developing five-year-old but it's a huge thing for him and for us.

The best part of this process is that Frankie was invited to participate in the Kindergarten Fall Festival this year, along with the General Ed class! He worked and worked and practiced and practiced and I am sure it must have been a painful process to follow the words AND body movements of six songs, one poem and one dance. Frankie would have melt downs in his preschool music class and will refuse to do PE because of his motor issues and challenges with coordination....I couldn't imagine him participating in a performance with twenty more kids and struggling to keep up without crying or breaking down. Well, he did. When he brought home the card inviting us to attend I was even afraid to ask the teacher if it had been a mistake. I figured, hey, if they are willing to give it a shot, so am I - let's do this thing! I tried not to build it up so much so he wouldn't give up before trying and at the same time, I tried to make a bit of noise just enough to get him excited about it...it was a hard balancing act! When the day came for the performance, he would not tell us what it was about - there was no getting a word out of the kid and his major thing was that the parents would be really surprised and proud of the Kindergarten class. Frankie was so happy to see us at the library when the class walked in he started clapping at us....awkward, since none of the other kids were doing it but I didn't care - he kept on telling us how much we would love what they were going to do and he was not wrong - it was the best performance I have ever watched because it was a display of self-confidence, trust, persistence and most of all, of hope. All of that wrapped up with a dose of Kindergarten charm. I could have not asked for a better show.

When the time came for the show to end and parents asked for an encore, "the dance" number was up and the "wipe out" song started playing. Oh, man, the hand movements, the jumping, the SURFING! Not all the kids did it right but they did it and so did our Frankie. He DID it! He believed he could do it and he did. That's enough reason to feast, and feast and feast! At the end of that night, during our praying time together, he told me that he "will never forget this day" but I am sure it's just the first one of many more wonderful days to come because he found a little switch inside that allows him to try HIS best, and to be proud of his accomplishes. That makes all the difference in the world and it's what Thanksgiving is all about; being grateful for realizing that what really matters in life is always inside of you.

Saturday, September 24, 2011

I never considered myself a simple-minded person, on the contrary, I used to enjoy complicated things, the more polarized a subject, the more interesting a discussion was for me! I was probably obnoxious and pushy; perhaps I was convinced that I was sharp and smart but the truth is I was probably unbearable.

That seems so long ago now that sometimes I feel like that was another person's life and not mine. Indeed, it was. My life is simple now. Day by day and step by step but boy, the pleasures a simple life can afford are amazingly underestimated. My world was turned upside down on a cold winter morning when a therapist from the UW Autism Center told me that my son had Autism; still, the first thing that popped into my head was: How do I fix him? I didn't think of the why's, I didn't ponder on when this had happened, all I wanted was to move forward, to look ahead and get my child to be normal, just like everyone else. I have been working on defeating Autism ever since that morning but I have also realized along the way that my son is not broken. He doesn't need fixing. He doesn't need to be like everyone else. His life is harder than other children's because he has to learn everything - nothing comes to him naturally but that is just a fact we live with. Once I stopped looking at him like a project to be completed, I started enjoying him for who he really is. Life became amusing and simple at the same time.

I cry easily these days but I also laugh easily and I must confess I'm easily amused. I'm amused at how things fall into place everyday and when they don't, I go to bed crossing my fingers that it will all be better in the morning. It might take a few mornings but they always do fall into place and when they do, it's always a small miracle.

One thing that makes me immensely happy is to see my children laughing. I can't help but to smile when I hear them giggling!~ Once upon a time my baby boy lost his voice and his smile but today he laughs and I can't help but to laugh with him, even when I might also have a tear or two in my eyes.

It's all in the small stuff and there is no reason not to enjoy it, one smile at a time.

This is Sparky, our dog. We don't know if it's a boy or a girl yet but we know it's a Portuguese Water Dog. (no relation to the Obama's dog, for the record). We don't know when Sparky will join our family but we know it will. We are sure as the sun will rise tomorrow that this dog will be our friend, our helper and our guide in so many ways the possibilities are keeping me up at night. This might just be the biggest thing that has happened in our family since Victor was able to drink regular milk or since Rebecca discovered Dr. Who, the series. I tell you, it's BIG.

Sparky is not going to be a regular dog. It will come from the best line of dogs we know, raised with love to work for love. I can't put it any other way.

So, we are not big animal people....to say the least, our daughter Rebecca has suffered for a long time because we wouldn't get a pet, specifically, a dog. We couldn't commit to the extra work and I personally felt it was just too much of a responsibility and I couldn't be bothered. Truth is, I didn't want to get emotionally invested with a pet that I knew will die one day. Well, life has a way to make you face your fears and I did fall in love with a dog, our sister's dog, who came to live with us two years ago. Although she was an older lady, Chiqui was amazing with our kids and when she was gone she left a big hole in our lives and in our hearts. I did learn one thing out of our experience with Chiqui; she brought the best out in all of us, especially in Frankie. They shared a especial connection and when the end was near for her, she chose to lay next to his bed - sometimes I wonder if she knew how much he really needed her and did not want to leave.

Since then, one thing has led to another and on a fateful sunny day we were at the City of Shoreline Parade and met a happy bunch - they go around helping people, young and old through their labor of love. This singular troop is lead by Mrs. Laurie Hardman, who is a certified breeder and trainer of these amazing dogs, the Portuguese Water Dogs. I must confess I'm very ignorant about dog breeds and I had no knowledge of them before; I did like their no-shed coat and hypoallergenic quality but that was that. Because I like to know and I like to research, I have made it a point to find out more about who these dogs are. I have found out they are intelligent, independent, working dogs that are easily trained into the various Service Dog roles such as hearing dogs (assistance dogs for the deaf), mobility dogs, and seizure response dogs. They also make unusually good therapy dogs . Therapy dogs! Did I hear therapy dogs? Once I bumped into Ms. Hardman again at the HS where I work, I knew the universe was trying to tell me something, so we started our journey to find our Sparky. With her help and guidance, there is no price tag we can put to the realization of a dream.

By the way, the name Sparky is a "puppy" version of Sparkles, the name that Frankie wanted for our dog. I'm not sure where he heard it but it couldn't be a better fit - this dog is sparkling, shining full of possibilities and it's already loved and wanted by a family that enjoys hard work and values hope more than anything in the world. Also, what better dog could we find for our water-loving kids than one that would swim with them? It's a match made in heaven!

Sunday, May 1, 2011

Who writes about feet? Not my sister, she hates feet. I can do it. I can write about anything these days, as long as it amuses me or makes me wonder and yes, I am easily amused....

My feet are not the prettiest feet, I get that, but for my son, Frankie, they are gorgeous. I know this because he told me so! Ok, so that's not a big deal to many but it's a HUGE deal to us. As many of you already know, our little one is ASD and we have had to re-arrange him inside and out to make him fit our society rules and expectations. He's awesome the way he is but we have to make sure everybody else realizes this, even if they don't take the time to see beyond his often expressionless face and awkward ways. Part of this is to teach him rituals that are socially accepted AND expected. Don't get me wrong, as a parent, I had to teach all my kids their "please and thank you's" but I didn't have to teach them how to point, how to smile, how to kiss, how to say "I love you." These were all small battles from the past that we fought and we won and we made a big deal out of them (see previous blog entries for proof!). Now, getting into the subjective stuff is a lot harder and we are working through it slower but steady!

Showing Frankie the art of "complimenting" others has been quite interesting for all of us involved since it's not as easy as it looks. I've heard that teachers usually learn more than their students and this holds true for pretty much all the ABA programs we roll-out for Frankie. First we had to use "compliments" among each other and make sure he understood what a compliment was; make it clear to him when he was receiving one and when others were exchanging them. Needless to say, our home became very courteous and pleasant, at least for a while! Frankie had to learn how to realize when he was being complimented and to be grateful for it. He also had to learn how to give one back without being prompted. Hey, people like to hear good things about themselves and flattery will win you friends - I tell you, one must get crafty these days to make friends at the playground!

Unfortunately, these kinds of things don't pay-off right away and the fruits of your labor are not reaped immediately, until one day it does. On that day, that blessed day, your kid comes up to you and randomly notices you had a pedicure done. Your feet are looking p-r-e-t-t-y nice....he thinks about it, he makes really good eye contact and tells you: "Mommy, you have beautiful feet" - and there you have it! Those words make it all worth it....all $17.50 of it and the half-hour you spent waiting. That day you and your kid learn the power of a compliment!

I probably shed a tear or two when I was told my feet were beautiful but not because I was flattered but because it was the proof that often times I need. I need wonderful proofs like this one to believe that everything Frankie needs to learn can be taught to him and that he can learn it. It does take a lot of effort, time and patience, but isn't it the same for EVERYTHING in life that's worth accomplishing? So, with that compliment in my mind, I will keep on moving my "beautiful feet" and hurry up on this trail we have ahead because time is of essence!

Monday, February 21, 2011

This picture is really old. It wasn't a pose; it wasn't staged - it was taken at a moment, like many moments of my life, when I just pray quietly, asking to find a way to live this new life I have now. I do this pretty much all the time, anytime, every day. If praying gets you to heaven, my ticket is ready...and this is all because I have a son who happens to be in the Autism Spectrum.

People tell me very often that I am a special person and that's why God sent Frankie to me - it's the total opposite. I wasn't special at all before I had Frankie. Truthfully, I am not special now if you ask me; I am just like any other parent who is facing a more challenging task than the parents of a typical child. There is one thing we do have in common: feeling overwhelmed! If you don't believe in something bigger than yourself, it's pretty much inevitable to sink deep into desperation but if you enlist the "big man" on your team, things do get a little easier.

All of my kids have been a blessing in my life and I am grateful for this. Although Frankie's special needs have been difficult to adjust to, it's because of Frankie I am more patient now. Because of Frankie I am more tolerant. Because of Frankie I don't judge. Because of Frankie I live day by day, like we are supposed to do anyway, making each moment count. I treasure the good days because they are glorious and I pray through the hard days because they are dark and I need to make it to the next one.

I must confess that although I pray constantly, I don't make it to church very often. It makes it a little hard sometimes to cope with one hour in the quiet room...It doesn't help either that your child is not welcomed in Sunday School because he is too distracting to the other kids. I'm not complaining, I am just saying that life doesn't fall into place smoothly for our special kiddos - even at church, where everyone should be welcomed. It's the truth and I won't sugar-coat either, still, I don't worry about how "churchy" I am or not - I honestly believe that God still gives me brownie points for trying. He knows I need Him. I know I need Him. This is more powerful than any homily I can listen to sitting on a church pew. God's gospel is alive in my life and there is no other way to describe my living arrangements: I live in the hands of the Lord and that's where my family belongs.

Our Autistic kids are here to make us better, to give us that extra push, to move us from being average to becoming great. We probably needed them more than they needed us and there is a God above who decided to match us in heaven because we probably had no hope otherwise. I believe this from the bottom of my heart and it comes to my mind every time I can't help my kid get over a meltdown. I no longer look for a cure to Autism; it's not an illness, it's a condition...like all conditions, I want Frankie to learn how to live with it, own it, control it and thrive in spite of it. That's a lot to wish for, I know it, but I am getting good at praying; practice makes perfect!

Tuesday, January 25, 2011

It was a selfish decision. It was irresponsible. It was probably shallow too but it was also the best thing that could have happened to our family.

Taking this step was like grabbing the oxygen mask that falls down on your head when there is turbulence during a flight. I don't know about you, but I have always questioned the instructions of the flight attendants. In case of an emergency, you are supposed to wear your oxygen mask FIRST and then assist others under your care with theirs. What??? It never made sense to me that I would put MY needs before the needs of any of my children. After grabbing the "oxygen mask" that literally bumped my head at the beginning of this year, I will never question airline policies again!

Autism was and continues to be a part of who we are as a family but it has stopped being everything we are. The truth is that it has been a slow process to work through, especially for me, since I am, without a doubt, the "soul," and not the head of this family. I did have to work through ALL the stages of grief and realized that after that first diagnosis, this journey will have a beginning, a middle, but not necessarily an end. I like happy endings; I always have. There is no happy ending or a sad one for this story - I have finally learned there is no end. For a long time I kept on hoping for an end of any kind but I know now that there is none and that's OK. In order to keep my sanity, something had to happen - I had to reclaim my own identity so I could help everyone else in this family to find theirs. Working has always done that for me. I am a working woman - it gives me a purpose and helps me get balance.

As it turns out, getting a balanced, stable, mother was all our family needed - It was all that Frankie needed. During the past few months, as things got tougher in school with Frankie, my world kept on getting bleaker and bleaker. Working hard was not paying off and I was falling apart....our family was falling apart. I was really scared to let go but once I did, everyone grew up a little and stepped up to the plate. Once I was out of the picture, everything fell into place - everyone fell into place. It was like stepping back and looking at a work in progress, like a painter might do - sometimes you have to see the big picture from afar and get a new perspective so you can finish your masterpiece - some times you need to get some oxygen first to stay alive and help those who count on you.

I'm grateful for those who encouraged me and told me everything was going to be fine if I did this for myself. I'm grateful for those who told me things would fall into place once I let go. Most of all, I'm grateful for all the positive changes this decision has brought into our lives and for the breath of fresh air that now fills our lungs. There is a way to live with Autism as part of your life, once you HAVE a life - struggling to make sense of it is not the answer, the answer we have found lies in keeping our identities strong for the journey and taking the time to breath along the way. Frankie will find his identity in due time and he will be strong to fight his own battles - he has a few examples to follow...more like FOUR of the them!

Sunday, January 9, 2011

An awful lot of people I know are getting divorced. The ones who are not, already did and the ones who are still together are not truly happy. The ones who are divorced spend time looking for that one person that would complete them. Some of them have found love; others are still looking.

I am still married but sometimes I wonder until when. I wonder if there is an expiration date for commitment. I have learned that divorce knows no rules - it's not a matter of age or maturity because when I think of all the failed marriages I know of, there are different ages, reasons and situations that contributed to the separation. At the end of the day, the result is the same, a broken family. Once it's all over, there are two people who decided to end something and start all over again. "All over again"...that sounds so hard, especially when you are of a certain age, when you are facing your own "middle life crisis" and you question what you have accomplished and what you have yet to conquer. When it comes to relationships, I used to think the secret for a fulfilling relationship was that "opposites attract" but the older I get I realize that a lasting relationship, is based more on your similarities than in your differences.

I have noticed there is a new trend of emotional and spiritual growth and people are looking to find more meaning in their relationships and are searching for their soul mates, their other half but I don't remember ever taking on that quest when I was younger. I was just looking to find the one guy who had all the qualities I didn't have so he could complete me and we could be a good team together. I found my guy. He is everything I am not. I am everything he is not. Here is the pickle, the older we get, the more those differences that seemed to unite us have now become the very essence of the distance between us. This past year has been a year of growth for me, when I am questioning everything, including my set of values. I have always believed that love was not a feeling but a decision. I decide who I love and I stick to it - here is what I believe: emotions come and go but commitment is the glue that makes a relationship last. Well, that worked for many years until my world was turned upside down and I came to realize there is got to be something else, something more.

Recently, a friend of mine who experienced a painful divorce many years ago, was talking to a friend of his (who is also going through a divorce!) and he was describing his newest relationship. He said that his girlfriend (who is also divorced, of course) and him were "male and female versions of each other" - I listened and watched. I watched my friend and his girlfriend looking at each other in a way I never see two adults do these days. They moved at the same time, they finished each other sentences, they seemed at ease, at peace, they were whole, they were complete. Good for them. I believe in second chances...and a third and a fourth. In a perfect world, you would get it right the first time around but we don't live in a perfect world and making mistakes is the way we humans learn our lessons. But then, what to do? Do you get divorced now or later or NOT? Well, again, I am making a decision but this time, it's also a decision shared with the man who has helped me build this family, our family. I have decided to make a compromise with the adult who now shares my life. I know he will never be the male version of me (ever!), but I choose to try for as long as it is possible, to build him up, to back him up, to help him out and in one word, to accept him for who he is and celebrate what he has brought into my life. I have also decided the best thing I can do for my kids is to love their father and teach them to love him with his qualities and shortcomings because we are not perfect - nobody is.

It's a win-win for everyone because in the end, we are all just looking for love and to be loved. It's really our choice if we go for a second chance or if we give each other another one in the same relationship we once felt was the right match. We can only hope we are not making a mistake but if we do, we just have to try again. We are bound to get it right eventually and when we do, it will feel like we were meant for each other, even if we weren't.

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